Parenting a Sanfilippo Child
— Kelly Wallis

Recently, the family of American actor Bruce Willis announced he has been diagnosed with aphasia. The news has raised some discussion about the condition and how it affects people. Aphasia is a language disorder that is brought on…

It’s hard to believe the world is still in the midst of a pandemic that reared its ugly head two years ago. These unprecedented times have disrupted so many lives in myriad ways. One specific way it affects the…

My daughter Abby has Sanfilippo syndrome, which is a terminal, genetic disorder. She will likely leave this earth before me. That thought alone is quite a lot to absorb and process. It forces me to think long term.

This is an update to my last column. When we left off, my family was about to leave our home in Houston, Texas, and fly to California, where our daughter Abby is a participant in a clinical…

If you have been following my column, you know that my 26-year-old daughter, Abby, has been on the verge of being accepted into a clinical trial for Sanfilippo syndrome. I am here to announce that it’s official! She…

What bookends to live between — diagnosis and death. This is a hard place to be, no matter where you fit in — the patient, the caregiver, or a family member or friend of any of these people. No…

This is a follow-up to my previous column about my 26-year-old daughter, Abby, potentially being accepted into a clinical trial. To recap, my husband and I were recently notified that she might be accepted into a clinical…

I recently received exciting news! My 26-year-old daughter, Abby, has been selected to potentially participate in a clinical trial for a drug to help manage or minimize symptoms of her disease, Sanfilippo syndrome. My husband inquired about…

Grief has been a prevalent part of my life for the past year or so. My mom unexpectedly passed away early last year, and because of the pandemic, her burial and memorial service were postponed to this summer.

I am tired. Caring for my 25-year-old daughter, Abby, whose body is giving up on her, is tiring. She has Sanfilippo syndrome, a cruel, relentless disease that is stealing her from me. When I have time to sit…

I often think about grief, a feeling that everyone experiences at some point in their lives. Whether it involves the loss of a pet, parent, spouse, sibling, child, friend, or marriage, grief is unavoidable. Because it is such a…

Most parents experience a time when they wish they could read their child’s mind. For example, when children are infants and can’t speak yet, wouldn’t it be great to know what they are thinking? Parents of special needs children…